National Hemophilia Program

The National Hemophilia Program assists people with hemophilia and other bleeding disorders and their families by helping to provide recommended and appropriate coordinated care through 12 regional grants with a connected regional network of 130 hemophilia treatment centers (HTCs) located throughout the country. These HTCs help improve the health of these patients by providing diagnostic and educational services for these inherited conditions; developing wide-ranging, culturally sensitive and family-centered genetic services and an understanding of how these genetic conditions affect people’s health.

This long-standing program, which began in 1975, is also important as HTCs provide outreach to people with bleeding disorders and their families within communities that do not have access to appropriate medical treatment and services, to ensure that patients receive medical, psychological, social, peer support, and genetic counseling throughout their lifetime, including the transition from pediatric to adult care.

Bleeding Disorders

Hemophilia is a group of inheritable bleeding disorders of specific blood clotting factors classified as hemophilia A and B. Classic hemophilia A is the result of a deficiency of clotting factor VIII; Hemophilia B is a deficiency of clotting factor IX. Approximately 17,000 people in the U.S, mostly males, are affected by hemophilia A or B, the most well known and common of the clotting factor deficiencies. There are also other inherited bleeding disorders including von Willebrand Disease (VWD). It is estimated that up to four million individuals in the United States have VWD. VWD is a bleeding disorder caused by a problem with a protein that is needed for blood to clot, and it affects both men and women. It is characterized by prolonged bleeding following trauma and during menstruation.

Activities

The National Hemophilia Program promotes providing comprehensive care for people with hemophilia and related bleeding disorders and their families through an integrated regional network of treatment centers. The program encourages grantees to work with Federal, State, and community partners to establish models of care in a culturally sensitive, family-centered coordinated manner. Grantees perform the following activities:

Developing medical, mental, social, peer support, and genetic counseling services for adolescents, including those services needed to make transitions to aspects of adult life including adult health care, work, and independence.
Providing services for women, including genetic testing, counseling, and education efforts for women including women with congenital bleeding disorders, partners of individuals with hemophilia, and women having potential carrier status.
Continued outreach to persons with hemophilia and other bleeding disorders that are not being treated within the federal network and are not receiving appropriate care.
Providing HIV/AIDS prevention, education, screenings, and diagnostic services to hemophilia and other bleeding disorder patients within the federal HTC network. Upon the diagnosis of HIV/AIDS, HTCs also provide treatment, monitoring, care coordination and continued educational services to these patients.

Highlights

Since 1975, the National Hemophilia Program has helped families and individuals with hemophilia and other bleeding disorders with the creation of a system for the comprehensive care and treatment of individuals with these conditions. Hemophilia Treatment Centers (HTCs) help to empower and engage patients to participate in national data collection efforts that result in research and outcomes that lead to improved care and outcomes for these patients. For example, men within the National Hemophilia Program with hemophilia A have higher or similar high school graduation rates across all racial/ethnic groups and all levels of hemophilia severity, compared with U.S. men of the same age. Graduation rates for black and Hispanic men with hemophilia B were also higher or similar to rates of U.S. men. This highlights that the multidisciplinary, family-centered care received at HTCs emphasizes prevention of complications, encourages medically supervised disease management, and facilitates psychosocial development which aims to maximize the affected child’s participation in school.

Resources

The Centers for Disease Control and Prevention (CDC) Universal Data Collection System (UDC) for Blood Disorders is a national public health surveillance project which collects data from people with hemophilia and other bleeding disorders of all ages to better understand issues across the lifespan. To view the data reports, visit http://www.cdc.gov/ncbddd/blooddisorders/udc/index.html
The American Thrombosis and Hemostasis Network (ATHN) is a non-profit organization that has partnerships with federal HTCs to develop a safe and secure national database of patient health information on bleeding disorders that serves as a community resource for research. To see a complete set of services and educational materials, visit http://www.athn.org.
Hemophilia Federation of America is a non-profit consumer advocacy organization that works in conjunction with other national and state organizations on behalf of those who have bleeding disorders. To learn more, visit http://hemophiliafed.org/.
The National Hemophilia Foundation serves hemophiliacs and their families through its local chapters. Patient services include support of comprehensive care centers, scholarships, patient education, blood drives, emergency financial assistance, and referrals. To learn more, visit http://www.hemophilia.org.
The HRSA Information Center offers a wealth of maternal and child health publications and resources. To see a complete list of offerings, visit www.ask.hrsa.gov or call toll-free (888) ASK-HRSA (275-4772).
MCHB Program Grants Guidance and Application Materials are available online. Those interested in applying for MCHB grants should visit www.mchb.hrsa.gov/grants/default.htm to access instructions and other pertinent information.